Monday, November 28, 2011

I managed to get Elena an intensive aquatherapy session. 2x week for approximately 8 weeks. My intention was to prepare Elena to handle a group swim lesson. I'm not sure if she is ready for that--but she is definitely ready for private lessons, should that be a better bridge to a group swim lesson!

10 hops in the water: apparently, this is a milestone for independence in the water.

E uses buoys to swim. Her kick is very good here, better than when her hands are free.

Elena guides herself through a small hoop under water!

Independent swimming! WOW!!! She is using foot fins here. She doesn't have the best kick (she kicks like she is crawling)--but with the fins, it is enough force for her to move through the water. WOW!!

Sunday, November 6, 2011

Parent-Teacher Conference at schoolI love E's teacher. He really tries to promote a sense of community in the classroom, and at the same time, allowing the children to be autonomous--at least, part of the time. This is difficult for Elena sometimes. Besides talking about what a great kid E is, e talked about how E relies on her aide, when both of us think she could do certain things herself. E's aide is FANTASTIC--but we wondered how far behind, if any, E would be if the aide just happened to be unavailable. This is an important test, since Elena will most likely not have an aide next year. I also learned (just recently) that we'll be redistricted to a different school next year. Ugh. Anyway, back to the meeting--E is very bright. At present, I have no worries about her academics. We have had some problems with teasing, and I brought it up. The teacher happens to be frustrated, with one child in particular, regarding teasing (not just directed to Elena, but she is an easy target). Not shortly after our meeting, there was a meeting with the principal, E, and the bullying student. That was a bit of a surprise to me--I didn't think they needed an official intervention. BUT, I applaud everyone for taking my concerns seriously. I didn't want to single Elena out. But, if it stops the teasing, or sets an example to show that behavior won't be tolerated, that's fine by me.

A Matter of TimeThis sort of ties in to E and the school aide/independence thing. In essence, we don't carry Elena any more. We try to get her to do things herself. She can fully dress and undress herself (occasionally she gets caught up on socks, and we put her braces and shoes on) but it takes a LONG TIME. So, we dress her on school mornings. On four occasions, I have carried her from her bedroom, down the steps, on the way to the breakfast table. On EVERY one of those occasions, we've been 10 minutes early for the bus. That means it takes Elena 10 minutes to get out of her bed, and slide on her rear down the steps. 10 minutes--and that's for ONE of the many things we expect her to do herself before school. As you can imagine, our school mornings are regimented--as to when E needs to get up, be downstairs, finish her breakfast, etc. or else we will not be ready when the bus arrives. Early summer, I timed Elena doing various activities, and decided it took Elena on average 6 times longer to do any gross motor activity (and some other activities--she's a slow eater, for example). 10 minutes is longer than that (to get down the steps)--but that's b/c she's just waking up and her motivation is zero to get out of bed. STILL. Until this improves (and I believe it will, at least some) it's a struggle to help E get more independent, and have time to enjoy things. Everyone says "it's a balance", or something like that. I KNOW. I get tired of hearing/thinking that.

E plays with the Tee Ball set Viv got for her birthday (pretty awesome! We should have bought this months ago!)

It's that time of year! We were excited to return to Camp Holiday Trails for (Special Needs) Family Day. CHT is a camp for kids--all kids, especially those with special health needs (and their families). The staff is WONDERFUL, inclusive, encouraging, energetic--it's a great environment. I love the fact that they are never phased by E's motor challenges, and they are always prepared to include her in every activity.

We came last year, but Vivian was too young to enjoy certain activities. This year, she did almost everything Elena did. As usual, E was not jealous, and cheered for her sister. I want Vivian to excel in what she does best, even if it means she does it better than her older sister--such as running, or playing tag, or hitting a baseball. It's tricky to encourage the actions of one child, when those actions accentuate the disability of another child. It's a learning process for all of us.

At camp, this isn't really an issue--everyone cheers for everyone, and it's fantastic. Nothing is competitive. Elena even had some friends there, including one from school, who rides her bus! (ADD PIC POST-PERMISSION)

After introduction and breakfast snack, our first destination was the rock wall. Our favorite counselor Stephen was there! E remembered him from last year the minute I asked her if she wanted to go to CHT Day.

Viv getting ready

Now, she's not so sure. She ended up going up 1/3 of the way, and then telling me she was done.

On belay? Belay ON! On rock? ROCK ON!

Elena trusts Stephen

Proud Climber

After climbing, we played lawn games. The grass isn't even, so that's a challenge--but E did great, and never fell! We played Train Wreck and a few other games. Viv wasn't too interested, so I had to keep her occupied for a lot of the lawn time. E was in very capable hands, and had great fun.

Painting Pumpkins after snack

After lunch, Viv went home for a nap (she was d-o-n-e!) and E and I went down to the fish pond. E's never been on a canoe. She was only a little nervous--mainly b/c she didn't like the fit of the life jacket. Don't we all remember how awful that felt around your neck when we were little?

Before our Canoe fishing excursion

The fish weren't biting.

After that, we went to the art studio for a little while, and then we said our goodbyes. The staff asked me about sending E to camp next summer. Jason and I have been wanting to send E to camp--we even paid for a spot at a different camp (2 years ago), only to arrive to see unmanageable terrain (and no refunds). If I had known about CHT then, I wouldn't have hesitated. We'll be back for sure!

Tuesday, November 1, 2011

If you're new to this blog, I organize a card exchange every year for Elena (aiming for a late December delivery date)--she LOVES mail! More importantly, the exchange has been a great way to remind Elena that there are other kids out there like her--kids who wear braces, or wear glasses, use crutches (or other devices), who have siblings, friends, go to school, etc. etc. The best part about it was I didn't say anything when she first saw your picture. But I could just SEE Elena's face recognize she was not alone in her struggle with CP. That is invaluable. It's been fantastic.

If you are interested, please email me (cpmom2009 AT yahoo DOT com) with the following information:

Your name (and/or child's name), child's age, diagnosis, favorite thing(s), siblings, etc.You address (in full, including country)How long mail will take to arrive from Virginia, United States (if you know) (particularly important for overseas mail)What holidays you celebrate, if any, near the end of this yearPrimary language--If English is not your primary language, we'll try anyway!

I will not share your email information OR addresses with anyone without your permission. This exchange is between E and you.

If you've already emailed me with your intent to exchange, expect me to reply to you this week!

*NOTE: This is NOT a gift exchange. Sometimes people send little things, which is very nice--but never expected. We'd most appreciate a card, a message (or a drawing/doodle/coloring if writing is difficult), and a picture of your child. We typically send a card with a message (Elena writes some or all of it) and a picture.

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.